Friday, September 18, 2009

To Syringe or Not to Syringe?

On Wednesday I had an appointment with my rheumatologist. I think it may have been the first time ever that I have been able to report to him that I am actually doing pretty ok. I mean, my joints still hurt every day, but usually they don’t hurt as much as they did a year ago. I still wish I had more energy, but at least I have enough energy to get myself out of bed and back to class. I still get tired way faster than everyone else my age, but at least I have enough stamina now to do some of the things I enjoy. I know “ok” might not sound like a victory, but it sort of feels like one to me. Compared to the last year of my life (which, let’s face it, sucked a very great deal), I’m actually pretty happy with the way things are going right now.

Don’t get me wrong – I still have pretty bad days once in a while. Yesterday was one of them. On top of me still feeling quite tired and sore from the wedding last weekend, it was a really long day of work and class. There were some really good things about yesterday: I got to see a classmate’s very first ultrasound and meet another classmate’s seven-month-old little girl, which was wonderful. I love babies and I am so happy and excited for both of them. But, considering my current level of exhaustion and soreness, it really got me thinking about how I would ever be able to be a mom myself, feeling like this. Later that evening, I was trying to help APL change the sheets on our bed, but my hands hurt so much I could barely pull the sheet over the corner of the mattress. Combined with my worrying from earlier, the fact that I was having trouble doing such a little thing made me burst into tears. I cried for at least half an hour over how unfair everything felt at that moment.

So, while things are certainly better than they used to be, I have to admit that I still have a lot more trouble with pain and fatigue than I would ultimately like. When I met with the rheumatologist the other day, I told him as much. He said that there are still some changes we can make with my meds that may cause additional improvement. On the one hand, I don’t really want to mess with my meds too much, since for the most part I am doing ok and I am mostly able to get back to my own life. I really wouldn’t want to make a change that might make things worse. But, on the other hand, less pain and more energy would really make a big improvement in my life.

Unfortunately, I’m not sure that I’m all that thrilled with the next step my rhematologist suggested: injections of methotrexate. By syringe.

Methotrexate is basically the RA drug. The way I understand it, if you have RA, you are pretty much on methotrexate. It prevents joint destruction and it usually compliments the other treatments, like Remicade and ENBREL. I have been on it pretty much since I was diagnosed. Currently, I take six pills of methotrexate once a week. But, since people’s bodies absorb pills in different ways, it makes sense that an injection might produce better results. Still…that syringe.

Now, I know I have injected myself with ENBREL 17 times already. But ENBREL comes in an auto-injector, like a big fat pen. I just push it against my thigh and press a big purple button. Then I hold my breath for the 15 seconds it takes for the medicine to be delivered. (Quite honestly, it is the longest 15 seconds of my life every single week!) But all I have to do is push a button. I never even see the needle.

Methotrexate doesn’t come in an auto-injector. You have to use a regular syringe. Which means obvious needles. First you have to stick the needle in the bottle and fill the syringe with the right amount of medicine. Then you have to stick the needle into your leg. Then, as I understand it, you have to pull back on the stopper a tiny bit to make sure you didn’t hit a blood vessel. And then you have to plunge the stopper yourself to dispense the medicine. It’s a pretty different process than simply pressing a big purple button. And much more needle-intensive.

Ultimately, I know that I can handle the syringe (or make myself handle the syringe) if it is really going to make me feel better. But it still gives me the jibblies. For the time being I am sticking with the pills. When I run out of pills, I’m hoping I’ll feel brave enough to try the syringe and that it will be worth the extra trouble.

1 comment:

Sarah said...

I agree with Mom... you are soo brave! I love you.